So, 'What now?'

I just got off the phone with my eye doctor. She gave me the test results of my last visual field test. The good news is my right eye has stabilized. The less fortunate news is my left eye has decreased by 50% since my last test two years ago. Well, I guess I did not need an objective test to tell me what I have been experiencing in the past. So what now?

Yes, so what now? Even my Mom asked the popular question, is there anything to help stop the progression. I know this is a question of sympathy. Since I would like to keep as much sight as I can, of course I am on top of any possibilities available to me. BUT, I emailed my primary retinitis pigmentosis doctor in Philadelphia just to verify. So, for the countless time, I asked 'Is there anything new for me to try?'. And the same reply, 'Not yet, I will let you know but keep checking in.'

So the question still remains, 'What next?'

Being legally blind at any age is challenging. Being legally blind and determined to feel dependent is a larger challenge. I know at this stage I will always be at some level of dependence. However, I have been told there are ways to be as independent as possible as a blind person can be. So I am looking into a guide dog.

So no, a guide dog will not drive you around. And no, a guide dog will not read that paragraph to you. BUT, will a guide dog help you cross the street? Help you not walk into a ditch? Help you not fall down the stairs? Yes, and I find these to be important in being independent and safe.

A guide dog learns intelligent disobedience. In other words, if I were to tell my guide dog to go ahead and he sees it is unsafe, he will not obey my command. I figure that should be helpful.

So, how do I go about this? Well, I feel very blessed for my family and their support. My Aunt Roberta had stepped up to the plate to help me research what school to apply to and what does it all mean. Yes, there are quite a few schools out there. So I am considering the school in Florida and the school in NJ which is the original 'Seeing Eye' school and so happen where my Aunt Roberta lives!

So, what have I found out. Well, after applying it can take from weeks to 6-8 months to get placed with a dog. These trained dogs are socialized with a family for their first year. Then, they spend about a year training at the school before being placed with a blind person. The application is very specific so that the blind person's needs can be met by the guide dog's capabilities.

Then, once you have been matched to a guide dog, you will be placed in a class when space is available. The 27 day class is offered 8-12 times a year depending on which school you go to.

I have spoken to owner's of guide dogs and they express how amazing having a guide dog has been for them. However, they have told me how challenging and frustrating the first week is in school. So, I am keeping that in mind. My Aunt and I are getting ready to fill out the application this week to apply. Although I have been thinking about getting a guide dog for a couple of years, I feel am now ready.

I have been told that a guide dog will change my life. As my eye sight continues to decrease, I feel a guide dog will be a welcoming change in my life. So here is to the 'what next?'. I know I am blessed to experience this journey. After all, not everyone gets to apply for a guide dog ;)

Visual Cues or Enlightenment?

In the practice of Yoga, we are taught to not listen to our personal mind. I second that idea. I would love to be more present to life. Live in the moment to moment. To fully experience what is in front of me all the time. But, I do know the mind has many great qualities. The intellectual mind can be very useful when used wisely. So here's my dilemma.

I first realized that I use my mind to see during my Hoop Convergence experience.Hoop Convergence is a fabulous hooping retreat in the middle of the woods in N.C. Even though I already live in the woods, I am familiar with my surroundings. On the other hand, the woods in N.C. were brand new for me. It had been a while since I had been in unfamiliar territory. With my eye disease, retinitis pigmentosa, my day vision is much better than my night vision. So, during the day I try to scope out and memorize the 'lay of the land'. Each cabin at the retreat had a ramp or a staircase to choose from to get onto the porch. When leaving my cabin, the ramp was on the right and the stairs on the left. I always took the ramp since it felt safer. Well, one of the evenings while visiting friends in another cabin, I approached the right side assuming there was a ramp. I approached what I thought was the ramp with confidence; like I could see the ramp. I took the footing as such, only to jolt my back as my foot fell to the first step. Each cabin was designed differently. I used my mind to 'see' the ramp. A ramp that was not there in reality. It was in those moments that it became clear that I relied on my mind for sight.

I guess I did not realize it since I know my surroundings at home. I know it like the back of my hand so to speak. I soon realized at home that I really do not see objects, but I just know where they should be and act accordingly. Wow! How adaptable the human can be.

Another incident that recently shed some light on my situation happened at home. I had asked my boyfriend to hand me the Vicks Vapor Rub jar. I was busy doing things and when he handed it to me I had forgotten I had asked for it. As he handed it to me, I had no idea what it was, so I asked. He reminded me I had asked for the Vicks. I quickly realized I could not even see what he was handing to me. Again, it is becoming more clear how I use my mind to 'see' things.

So here's my questions, should I not listen to my mind? Is this my intellect mind or personal mind? Is this part of my mind making life easier for me or not? Well, I guess it does not matter what I think. I do know that as I let go of my personal thoughts everything gets more clear to me. The most important thing for me to see is clarity. Then I will stop 'looking' and just 'seeing'. How Buddhist of me ;)

Jodi Jainchill PT,CFMT

To Believe Or Not Believe I'm Blind

'Well, I know she cannot see, but I am not sure if it is as bad as Jodi says it to be.' Well, if not being visually impaired is not enough to deal with, I used to find myself sometimes having to defend my 'blindness'. I have often felt I needed to 'prove' how much I REALLY can see. I was under the impression that certain people around me felt like I was lying. I wondered if these same people would question whether a person who is a paraplegic is faking if or how well they are able to walk.

Now do not get me wrong, most people do not feel this way. Most people know my integrity. They also know that I have always been a hard worker. Most people are impressed by how well I do considering my visual impairment. But it is funny, I was once told a saying that '100 good job boy is canceled out by one oh shit!'

I have been told that I do more than many sighted people. I have also been told that my achievements can make it easy for others to not understand my visual impairments. I was born into a body with a hereditary eye condition called retinitis pigmentosis (RP). So basically, I have small islands in my central vision that I can see out of. And in those small islands, I see 20/200 with correction. At least that was what my last test said over two years ago. Unfortunately, my visual impairment is progressive. I do not get them checked at this point since there are no real cures. But I do not need a test to share with me that it has continued to progress since my last eye visit.

Although I do not go to my retinal doctor regularly, I am in contact with him often. Anytime someone mention, 'I think they found a cure for you', I email my doctor. My doctor has been following my family since I was five. He is one of the top RP doctors in the world. My doctor has dedicated his life to researching gene therapy for my family's eye condition. We are so grateful to him and other of the like. At this point, none of the information I have shared with him is helpful to me and my family. My doctor is hopeful that some cure will be available during my lifetime, but not yet.

When I realized some people did not believe me, I felt angry and hurt. People who have known me all my life would never doubt me. They know me well enough and have spent enough time with me. I know I can throw people off because I use reasoning to see sometimes or just guess. I look in the direction of people's eyes and I seem to have good eye contact, yet I do not see their face. I guess until these people borrow my sight for a day, they just would not understand.

There was a time when I wanted to prove to them that I cannot see well. I wanted to show them my test that shows my visual field. I wanted them to understand why sometimes I may see something and then I cannot. If something is in my little island, I will see it very blurry. If it is not in my small island, well, it is not there for me. I can see the inconsistency being confusing. Yet, to not be believed is a whole other thing.

At some point, I just had to let go of caring what people think. If certain people do not want to help me with safety because they do not believe me, well, so be it. Although, I have found those relationships don't last. I have learned there is a much deeper issue in those 'friendships'. I am learning you cannot blame people for what they think or feel. I also have learned that I do not need to waste my time trying to prove what I can and cannot see to these people. I would rather spend my time enjoying Life. Most of my daily tasks take many times longer to do, so I have no precious time to waste.

Like I said, it is not the majority of people I interact with that feel this way. I just wanted to share some of my human experiences with you. I think our human relationships are interesting. After all, the human is a two legged animal.

Jodi Jainchill PT, CFMT

Where Do I Sign?

I am standing at the cash register with my 'white' cane in my hand and it is time for me to use my credit card. I swipe it through in every direction possible till the lady behind the counter says cash or credit? When she hands me the receipt to sign for my credit card I ask her, 'where do I sign, I am visually impaired?' I say this while I hold up my 'white cane'. The cashier points at the bottom of the paper and says 'where it says sign.'

Well, if you were standing in my shoes with a 'white' cane, what do you think I should say. Maybe she did not notice my cane? Maybe she did not hear me say I am visually impaired? Maybe she is thinking of what she is making for dinner and she is on auto pilot?

Well, I feel I can take two different approaches. I can ignore the 'ignorance' or I can educate. Do they not realize a person using a cane and asking where to sign cannot see the lightly printed five point font word 'signature'?

Well, from my experience, the passive approach is not good action. Therefore, I need to approach this situation without being defensive but informative of my situation. After all, I go to the same stores and will run into this each time.
So I ask, 'do you know what visually impaired means' in a very confident but compassionate voice. That always gets their attention.

I have noticed, some people are just not comfortable around 'disabled' people. Like saying the words 'see' or 'read' is taboo or offensive. Or better yet, they don't look at you or turn their back on you when in a group conversation. Hmmm...not sure what to say about that.

On the other hand, some people are champions! They are so helpful it feels like they want to walk for you, almost carry you. In these cases, I just educate them with what I am capable of seeing and let them know how much I appreciate their help and consciousness of me.

Finally, there are the people that are just compassionate and clearly comfortable in my situation. They ask what I need . They assist me with love and not feeling sorry for me. They feel honored to help me. Nothing worse than feeling like you are annoying someone cause you cannot see what color or how much a product costs.

So as you can imagine, all sorts of emotions can arise from these daily encounters. After a while, you just get comfortable addressing these situations and sometimes find them quite humorous. Sometimes, it hits you harder and you handle them with as much integrity as you can. But, my favorite part of my disability is that I get to interact with all sorts of people. People that a sighted person may not normally get to opportunity to interact with.

Jodi Jainchill PT, CMFT

"Blind Like Armadillo"

So I once posted on facebook that "I ran into an armadillo, we must not have seen each other." My friend, Heather, got a kick out of that. I thought it was funny too. Definitely should have fun with what I have been given and not take Life so seriously. I believe that Indigo Girl's song "Closer to Fine" says, "It's only Life after all."

There are armadillos all over where I live. There was a time when my horse back riding friends and I would go riding in the fields, those darn armadillos would make holes all over the place. Armadillos, of all animals, should know that they are making it more challenging for me!!!

I took on the name of "Blind like armadillo" when my riding buddies were coming up with "Indian" names. So was I offended? Well, I am not blind nor visually impaired, my body is. Although, I do find it odd that when people talk to me they comment on how blind I am or tell me I cannot see.

I have two responses to that comment. I have so much to offer and yet someone can only see me as the "blind" one. That is very odd to me. The other response is if someone is in a wheelchair; would every time you see them would you say "so you cannot walk," or "here is the paraplegic."

I have learned that people are uncomfortable around someone who is disabled or handicapped. They do not know what to say or how to act. I am not offended when someone says "what did you see when you went to the zoo," or "did you read that book?" Everyone has their own experiences. Everyone sees reality differently. I have adapted with the help of technology to live in this world in a body that is visually impaired. I really get to see things in a different Light!

Jodi

To The Question: Have You Always Been Blind?

Well, actually, I am not blind; the correct term is visually impaired. I remember being in second grade and crying to my parents that I could not see the black board at school. My parents took me to the doctor and sure enough, I needed glasses. When I was between the ages of 10 and 12, I was sent to Bascom Palmer Eye Institute in Miami. I was diagnosed with Retinitis Pigmentosa (RP), which is a progressive eye disease of the retina. I inherited it from my father's side of the family. For about ten years, my two sisters, father, and I, went yearly to the Eye Institute for research purposes. As a teenager, my parents and I never discussed my eye condition. I was never treated any differently. I went through regular public schooling and had endured my struggles. I would get by by asking people if I could copy their notes from the board.

I was also very involved in sports growing up. I was on a swim team, dancer, track and field team, and practiced judo. Thinking about it now, each of those sports were a challenge for me, especially at night. RP first progressively takes your night vision and as a child my night vision was already poor. I did not realize how differently I saw compared to others. Sometimes, I had a swim meet at night or dance performance in dim lighting. I also had to train and compete in judo tournaments without my glasses. Contacts were not an option for me then.

The term night blind was never used when I was growing up. I never thought of myself as being partially blind. I used the term partially blind because my day vision was still in the legal limit to drive. By the time I started community college, my "eyes were opened" you can say, to my condition.

In community college,I had to write an essay. I had a hard time seeing the lines on the paper the teacher handed out. I will never forget my experience. The whole class was quietly writing and I went up to the teacher and whispered to her "I hope that you don't mind that I wrote on my own paper because my eyes are bad and I can't see the lines". She said out loud, "What? I am hard of hearing." I wanted to die! Here I was trying to be discrete, and the teacher was getting the whole class's attention. I had to repeat myself. My teacher gave me a paper with a room number an told me to go there. I had know idea what was about to take place.

In the room was a blind man. He was sitting at his desk. I told him I wasn't really sure why my teacher has sent me here. After speaking with him for a few minutes, he asked me if I had RP. I was surprised by his knowledge. The man asked if I understood what the prognosis of RP was. I did not, but did not want to sound unintelligent. So I said, yes. Then the shocking statement came when he said "so, you know then you could eventually go completely blind?"

At that moment, I had felt like someone just sucked all the life out of Me. My cracked voice told him that I had just learned something about myself . He was very compassionate and gave me his contact information to educate me on the assistance the school can provide to make school easier with my limitations.

As soon as I walked out of the room, I literally fell against the wall. When my Mother and Grandmother picked me up,I told them what I had just learned. My Grandmother does not speak English well so when I saw the look my Mother gave my Grandmother as she translated what I had said got me angry. I felt like I was given information that they were hiding. I went to my room and cried.

The question that I contemplated was "why didn't my parents tell me?" Since we never discussed my eye condition, I didn't feel comfortable bringing it up. Like when you are ready to wear a bra but nobody brings you to buy one :) I just figured that they did not want to worry me or maybe cause my mind to speed up the progression of the disease.

I just went about Life and got my driver's license. I drove for about 4 years. Eventually my day vision decreased and I could no longer drive at all. Next on my journey, I started going to the Light House for the Blind. This place provides skills to make daily function easier for people with low vision. I also learned how to walk with a cane.

RP is challenging because you don't really fit in the sighted world or in the blind world. I know I have been blessed in the sense that I have been able to experience both worlds. Not many people would think being blind could be a blessing. For me, I have seen things that sight could not reveal.

Janice

To the Question: Do You Mind If I Ask About Your Eyes?

Sure. I have retinitis pigmentosa and was diagnosed at five. It ran in my family. My older sister, Janice, has it the worst. My middle sister is mildly affected; she still drives and raises two kids. My Dad did not have any symptoms until he was in his 40's and only in one eye.

The disease referred to as RP effects both acuity and field of vision. You are first effected at night and then eventually during the day. Each individual progresses differently. But, ultimately, you can lose all your vision like my Uncle and my Grandfather did.

It is hard to explain what I see. I have small "islands" that I see out of. Therefore, if you are in my field of vision, I may see it and if not, then it is not there. But, if I move my head I may see it. So I do ALOT of scanning!
It is a challenge for people because sometimes I see something and sometimes I do not. Even when I do see something, it is very unclear with no details. So, for example, if I look up at a tree and see something moving, I may say I saw it! But really, I only saw "something" move. I could never identify it in a line up. But, if someone tells me to look into the tree and look for something, the chances of me finding it is slim to none. Ironically, this is frustrating to people...how funny is that!

I get by with the attitude to "just go for it." There is a safety factor but I do OK 90% of the time. The other 10% I just have to laugh and say, "didn't see that, oops!"

At least I stopped driving almost nine years ago. First, I had just stopped driving at night, but continued during the day. Then, I started only driving during the day in familiar areas only. Then, when cars starting appearing out of thin air (my islands were getting smaller) I had VERY strong intuition to stop. And I did. Cold turkey. That's the best way to break a habit. I actually felt so relieved when I stopped driving, it was scary. I'll tell you another time the adventures of no longer driving as a young adult living in a rural area.

Jodi